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Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our PBD-ZSD journey.

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Going through the motions

It has been nearly a month since I last
wrote. I feel like we’ve been on autopilot since the middle of May, simply
moving through the motions getting through one day at a time.

Over the last couple of weeks we have:

Placed our house
on the market. Jeff has accepted a new job and our family will be moving
sometime this summer.

Visited Farm Park in Peoria, IL were we got to meet up with another family from the area that I met through Illinois Mommies of Miracles.

House hunted and
made an offer on a house in our new city (contingent on the sale of our current
home)

Visited Ethan’s
potential new school. We are going to be visiting another possible classroom
placement at the beginning of the school year before we make a decision about
what will be the best environment for Ethan.

Scrambled to get
the house ready for a showing numerous times. Please continue to pray for the
sale of our house.

Shared in the
excitement of my younger brother’s engagement to a lovely young lady. They seem
to be extremely happy and in love.

Discovered that
Ethan now knows how to crawl/climb stairs! This is really exciting and
incredibly dangerous.

Wrapped up Ethan’s
first year of preschool. It was tough to say goodbye to his amazing teachers
and therapists.

Spent an
afternoon with two other PBD-ZSD families. We met in a small town that has a
McDonald’s and a nice local park that is about an hour to an hour and a half
drive for each of us. It was wonderful. Ethan even had his first McDonald’s play
land experience – I was able to help him slide down the slide.

Transitioned into
a summer schedule with outpatient Physical Therapy and Speech.

Enjoyed a few
morning walks although the weather hasn’t been as cooperative as we’d like.
Hopefully we’ll be able to start getting more walks in soon. Ethan is only good
in his stroller for about 20 to 30 minutes, so we have a little one mile loop
that we walk that takes just about 20 to 25 minutes to complete.

Mourned the loss
of another little one due to the devastating effects of PBD-ZSD. The mom and dad are
believers and they spent the last hours singing, praying, and talking to their
baby boy. They didn't even get a year with him this side of heaven. I know he
is healed of this horrible disease but my heart is breaking for his parents,
and I can't help but thinking that unless we get a miracle -- spiritual/supernatural or scientific/medical -- I
too will someday have to live through what they are going through. I hate this
disease! Please pray for all of the families impacted by this disease -- those
whose children have passed away and those whose children are still fighting
PBD-ZSD one day at a time. Please pray that the doctors and researchers will
find effective treatments and a CURE! Please pray that families would turn to
God, not away from Him in the midst of this life changing journey. Having a
child with PBD-ZSD is so hard even as someone who believes --- I still have
lots of issues, questions, doubts, and frustrations --- I can't imagine what it
would be like if I didn't have faith in Christ.t a miracle --
spiritual/supernatural or scientific/medical -- I too will someday have to live
through what they are going through. I hate this disease! Please pray for all
of the families impacted by this disease -- those whose children have passed
away and those whose children are still fighting PBD-ZSD one day at a time.
Please pray that the doctors and researchers will find effective treatments and
a CURE! Please pray that families would turn to God, not away from Him in the
midst of this life changing journey. Having a child with PBD-ZSD is so hard
even as someone who is a believer --- I still have lots of issues, questions,
doubts, and frustrations --- I can't imagine what it would be like if I didn't
have faith in Christ.

Today our home is getting a new roof. We hope that
whoever buys our house will enjoy it. I’m not even going to fight with Ethan to
wear his CI today with all of the noise. Ethan is still having trouble bonding
with his implant and we are really struggling to get him to wear it. We know
that his brain is still learning what everything sounds like, since CI hearing
is different than the amplification that he used to get from his hearing aids,
but a majority of the time he takes off the CI head piece it is because he is
frustrated, mad, and/or wants our attention. Ethan’s communication is so
limited, and he has so little control over the world around him, he knows that
he can rip the head piece right off his head and we’ll work hard to try to
figure out what it is he’s trying to tell us. We continue to put it back on and
tell him and sign “NO” but so far it isn’t helping. He is much better about
keeping the head piece on when we are not at home. The church nursery seems to
be where he tolerates it best!

I would ask
that you would keep us in your prayers. I imagine that we are going to be
having a very busy and stressful summer as we sell our house, buy a house, and
transition to a new city that is away from Jeff’s family, our church family,
and friends, where we will need to find new doctors and therapists for Ethan as
well as ourselves. We will also need to find a new church that will be able to accommodate
and care for Ethan so that Jeff and I are comfortable attending worship service
and Bible study knowing that Ethan is safe. Plus, this fall Ethan will be
starting at a new school. Your prayers would be greatly appreciated. Thank you!

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